New 'waterbed' treatment gives cancer patient hope

Rome Torti, 30, with his wife Rachel and 2-year-old son Ryder at their home in Miami on the Gold Coast, QLD. Rome has an inoperable grade 4 brain tumor and will commence oncotherapy in Sydney later this month.

After months of regular scans, so common they barely rated a mention, it was the sight of a miniscule blood vessel which turned Rome Torti’s world back upside down.

After defeating an insidious tumour the size of an orange, which had forced it’s way into the left temporal lobe of his brain, the 30-year-old was feeling the best he had in years.

Surgery soon after the tumour was discovered in May 2009 reduced it to the size of a golf ball, and despite the sympathetic looks and conversations peppered with the phrases "time left" and "all we can do" from doctors, a combination of conventional and natural therapies reduced the rest of the tumour to mere scar tissue three years later.

However, sitting in a radiographers room in September 2012, just weeks after Rome began a new job and was entertaining the idea of driving again - and just months after marrying Rachel, the love of his life and mother of this two-and-a-half year-old son Ryder - doctors discovered blood vessels were once again feeding the tumour.

It was back, this time the size of a pea but so deep within his brain tissue that an operation would prove fruitless.

Doctors again started with the sympathetic looks, but the Gold Coast photographer wanted none of it.

“I was just thinking, ‘I am not ready for this, I have plans’. There is still so much I want to do that I haven’t done yet, so no," he said.

“So this time, it’s like, ‘OK, what can we do?'”

Rachel immediately switched the family to a “clean” diet, filled with whole grains, fresh fruits and vegetables, and one that cut out sugars and bad fats, which appears to have helped restrict the tumour’s growth.

Chemotherapy was once again offered, but doctors were unsure how much of an impact it would have and radiation was considered too dangerous this time around.

Then the family’s naturopath suggested hyperthermia treatment, a course of treatment popular in Germany and other parts of Europe and Asia, but little known in Australia.

Friends of the couple, including Aaron Morrison of Morrison Media, immediately launched fundraisers to help pay for “whatever Rome needed, wherever” and while investigating options, they discovered the new Oncothermia Clinic based at the Prince of Wales Private Hospital in Sydney.

Rachel contacted them and after a tense wait and consultation, Rome was accepted.

The clinic, just opened for a month after years of fundraising and campaigning by Jenny Barlow, a New South Wales woman who discovered the treatment option after losing her husband to cancer in 2006, has already treated five patients.

Rome will be one of the first brain tumour patients to undergo the procedure in Australia later this month.

Dr Michael Jackson, a radiation oncologist consultant with the clinic, described his hopes for oncothermia treatment as “cautiously optimistic”.

“It’s a form of hyperthermia or heat treatment, and the rationale is that [if] cancers are resistant to radiotherapy and chemotherapy, heating them, at least in the lab and in experimental animals, makes those cancer cells more sensitive to radiation without causing the more normal cells to be sensitive. So hopefully you get more tumour shrinkage without any increase in side effects,” he said.

Patients are placed in what looks like “a large water bed, which has water heated to 30 degrees, so it’s nice and comfortable,” Dr Jackson said.

“That acts as one of the electrodes and the other is a paddle which is about 30-40 cm across, which you put over the part of the body where the tumour is and the electric field then runs between the water bed and the paddle.

“Then you just lie there for an hour.”

Dr Jackson said there had not been a lot of published studies completed on the effects of oncothermia, which he hoped the Australian clinic could change.

“Once we have experience using it [the oncothermia machine] we intend to, set up a formal trial,” he said.

“The neurosurgeon, Charlie Teo, [also based at the Prince of Wales hospital] who treats a lot of patients who are in fairly desperate straits, has sent patients to Germany for a similar technique and he had had some good results with some of his patients, so we thought there was enough evidence, not hard evidence, but enough suggestive evidence to make it worth trialing this treatment here in Australia.”

That treatment won’t come cheap – the clinic hasn’t worked out the final figures, but each treatment is expected to cost between $3000 and $4000.

“We are trying to select patients who have a reasonable chance of benefit, so people like Rome are very good, because while they have a tumour which is dangerous to them, they are quite well at the moment. So they are in a position where if they do benefit, if the tumour does shrink with the oncothermia, they can take advantage of that.

“This treatment, it is potentially valuable but it is still experimental…we hope it will work, we still have to prove that and if it does, it will mostly be as an adjunct to other treatments. It can work on its own, but we think it will get its best results combined with chemotherapy or radiotherapy or possibly both.”

For Rome and his family, who for their son are treating their three week stay in Sydney as a “holiday where dad just has to go to the hospital every second day”, it’s a chance.

The couple have chosen to focus on staying positive and happy, an attitude which has helped them through some of the darkest times.

“We have always had fun the whole way through it,” Rachel said.

"It seems so stupid, but we would just put on funny music on the way to treatment, we are always smiling and happy where ever we go, because that’s just Rome’s disposition and that is the only way I felt we could get through it

“Everyone else is so sad in the waiting rooms and I do feel guilty, because we are always smiling in there.

“But you either laugh or cry and that has always been our theory. And we choose to laugh.”

Rome added: “It’s not really me to try and be anything other than as happy as I can be and I have a lot to be really, really happy about.

“So to keep that, I am not going to say no to anything. I suppose it is what anyone would do. You can be angry and think, ‘why is God or whoever doing this to me’, or you can just pick yourself up and stand up and do what ever it is you have to do.